Living with and coping with liver chorrohiss, I just need to connect with people who understand.

[scoobydoo10]

Hi my name is Kathryn I'm writing to connect with other people who have liver decease and are waiting to be accepted for a transplant. People with similar symptoms and how they are coping.

[jojokarak]

Hi Kathryn most people who use this forum are going through the same or have been through the same. My coping technique was this forum and another support group and I just talked, ranted, moaned or had a giggle x. What exactly at the moment is getting you down?

[scoobydoo10 in reply to jojokarak]

At the moment is being taken off the transplant list because they consider me to be a high risk of a relapse. Don't know how to go about changing their decision. I did multiple tests over a year because I thought it was to see if I could endure the long operation, what I didn't know was the last 3 appointments were to see if I would be eligible. Just really depressed because they just gave me a death sentence with no hope.

[jojokarak in reply to scoobydoo10]

It takes time am sorry to say. I didn't get on the transplant list first time either and I was in and out of hospital constantly. Are you being monitored because of alcohol? If so they did this with me also and I had to see an alcohol worker everytime I had an appointment and I got so pissed off with seeing them I used to get so angry I would end up kicking off but it doesn't get you anywhere as they have to make sure no one is going to abuse themselves again. I didn't even have cirrhosis due to alcohol either I drank more than I should though. The whole transplant list is frustrating because even when you do finally get on it (and you will) your on and off like a yoyo with infections or blood's are not right the best way to deal with it and it's hard is just get up and get on with each day as it comes. Where do you live? If you don't mind me asking x

[RodeoJoe in reply to jojokarak]

Good advice there Jojo. I also had to have an alcohol assessment by a councillor\nurse, and my cirhossis was not alcohol related either. I also had drunk more than I should have, and was given controversial advice from a consultant that drinking sensibly (14 units/week) was ok. This became an issue when I went for assessment.

One day at a time, best advice ever. Just take one hurdle at a time. It's not easy to think I need to get on the list and these are all the problems I'm having. I would get a clear answer from the consultants regarding what they considered the hurdles and how they can be dealt with. Then I'd go away knowing exactly what I needed to do and how long it would take.

[scoobydoo10 in reply to jojokarak]

I live in Richmond Hill, Ontario. Canada

[scoobydoo10 in reply to jojokarak]

Richmond Hill, Ontario Canada. Thanks everyone for their advice I am just so new to this and don't know how the process works. I just need some hope that I might get a second chance at life to keep me going and to prove that I will never return to a drunk living. I also have made arrangements for alcohol counseling and a aftercare program and will go regardless of their decisions, also it helps so much to hear from people who get where your coming from so please if anybody has anymore advice or information I would love to hear from you. Thanks Again

[jojokarak in reply to scoobydoo10]

I am not sure how the Canadian medical service works. But I do know as long as you are putting every effort into changing your lifestyle and taking doctors advice then you always have hope. Your going to have hard days but you use this forum and listen to people who have been through the same and we will help you through it, we know how it feels and it is just one day at a time as then you don't put any pressure on yourself xx BTW I am in Manchester UK 😀

[scoobydoo10 in reply to jojokarak]

My Grandparents came from there so I have alot of extended family from there. One place on my bucket list to visit as I love history when I'm healthy enough to do so. You really do help me keep my hopes alive so Thank You for being there!

[jojokarak in reply to scoobydoo10]

Good heritage then 😁 you will have the mancunian fight instilled in you x just glad to ease your concerns this forum was a God send for me in my darkest days and they helped me through it, even after transplant I haven't had a smooth journey but I am a lot stronger than before physically

Are you on Facebook?

[scoobydoo10 in reply to jojokarak]

Yes I am

[1football]

Hi Kathryn

Your on the right forum for sure. I have liver cancer & have been accepted on transplant list, so if I can help please don't hesitate to ask

Huw

[scoobydoo10 in reply to 1football]

Thanks I lost my husband to liver cancer in 2007 and he was giving 5-8 months to live and passed away in 7 months. His doctor refused to refer him for a transplant as he said that he wouldn't be eligible as it resulted from hepatitis caused from alcohol. So now I've been refused for the same reason and will not be given a second chance of living a healthy sober life nor will my son who was going to be my donar be given the opportunity to save his little sister and himself from losing their only surviving parent but as long as I have a heartbeat I will continue to challenge this decision. And I hope your transplant comes soon and you will live a long happy life. I was wondering if anybody was from Ontario, Canada and going through this process?

[scoobydoo10 in reply to 1football]

I was wondering if anybody has had Tipps (shunt) procedure done for Liver Chorrohiss. My main symptom is fluid retention where I have to get my stomach drained every other week and basically keeps me immobile and unable to walk on my own or drive.

[jojokarak in reply to scoobydoo10]

Just seen this after replying to your other message. I had the tipps procedure done I had it done due to bleeds though but I know others who had done for water retention and it worked for them and it also stopped me having internal bleeding x

[Hidden in reply to jojokarak]

Hi

Where in Manchester do you live? I live in Castleton Rochdale.

I've got Nash but just seem to be feeling worse and worse. My memory has gone terrible, brain feels foggy.pain is awful. I know people are worse TT Han me and I've got keep smiling . Please take care. Lots of love Lynne xxxx

[jojokarak in reply to Hidden]

Sorry lynne it's took me a while to reply I have had such a busy week. I am in Eccles, but from Mosside originally I have probably lived in every part of greater Manchester though lol

I know it's so hard living with cirrhosis but as long as you keep positivity which you sound like you have you will get through it xxx

[scoobydoo10 in reply to jojokarak]

I'm going to today to talk to a hepatologist to discuss this and I'm thinking this is the way to go although I know that probably I will need a transplant down the road but could be a long time since my Meld score went from 20 to 11 and other results are in the normal range. So I thought if this procedure could make me more mobile and able to drive that would be great. It will also allow my son to continue his education which has been put on hold as he became my full-time caretaker. God sent me a angel when he chose me to be his Mother. Thanks for keeping in touch with me and you have also been a God send as well as others who have given me great advice.

[mrsmerlin]

Hi

As the others have said, this forum is literally a life saver.

We all get depressed at times and angry at the system but in truth they manage the lists in the best and farest way possible.

The one thing I was told tgat changed my thinking is tgat we aren't dying of anything we are living with it (like the daft old bat relative you can't hide from friends).

We are only dying as we take our last breaths, up until then there's always hope and life

Rita xx

[scoobydoo10 in reply to mrsmerlin]

Great advice and well taken just need a little hand up once in awhile. Thanks